The Tragic Loss Behind the NEC Society and the Miracle Milk™ Stroll

A little over two years ago, beautiful twin boys, named Micah and Zachary, were born. Unfortunately, Micah and Zachary were born three months prematurely, weighing just over two pounds each. Their mom, strong and determined, began pumping breastmilk for them right away, knowing that her milk would be the best thing for her delicate, premature boys. While in the NICU, these babies were given formula fortifier. No one ever mentioned to this family the risks of formula and formula fortifiers, nor the life-saving benefits of human milk.

Micah developed necrotizing entercolitis (NEC). He fought for months, but tragically passed away from NEC and related complications when he and Zachary were 11 months old.

Micah’s mother, Jennifer Canvasser, went on to form the NEC Society, a non-profit organization dedicated to protecting premature and fragile infants from this devastating disease.

Micah fought bravely before succumbing to NEC.

Necrotizing enterocolitis is a multifactorial intestinal disease that affects the bowels of premature infants. 500 premature babies across North America each year will die from it. 5000 more will be horribly sickened. NEC causes an inflammatory process that can lead to intestinal tissue damage and death. NEC is infamous for its severe morbidity and mortality rates. Because fragile, premature infants cannot metabolize infant formula the way a healthy, full-term newborn can, formula feeding can increase the odds of a premature baby developing NEC. More research is needed, but some health care professionals believe that adding formula-based fortifiers to human milk can also increase the likelihood of developing NEC.

Once diagnosed, prognosis is grim. One-third of these babies will die from NEC, and those that survive are subject to lifelong neurological and nutritional difficulties. Thirty years of medical advancement has done nothing to improve the chances of those diagnosed with NEC, and NEC continues to be one of the top 10 killers of infants.

NEC is unpredictable, but the one thing we do know is that when premature babies receive human milk, either from their mother or a donor, their chances of developing it are much lower. Human milk can reduce the risks of NEC by nearly 80%. The medical costs of treating one baby who has NEC can run into the millions of dollars, with the ultimate cost being the life of the baby who contracts the disease.

Every day, hospitals treat the sick and injured with blood transfusions. Everyone knows someone who has either donated blood or received blood. We appreciate and recognize blood transfusions to be a life-saving procedure. As a society, we need to view human donor milk in this same life1saving category. Human donor milk can save lives and prevent NEC in premature infants. Yet 60% of NICU’s do not offer human donor milk as a feeding option for their premature or compromised infants. We need increased awareness, funds, and campaigns, just like the Miracle Milk™ Stroll, to ensure that all fragile infants receive life-saving human milk. We also need more mothers to become milk donors. We need more people to understand that NEC is a real threat to our babies. Infant death due to NEC is more common than infant death due to influenza, allergies, car accidents, choking, and drop-side crib accidents combined. Yet, surprisingly, NEC continues to be the least well known. Lack of awareness and funds is a Booby Trap!

Jennifer Canvasser founded the NEC Society after losing her son Micah.

Jennifer Canvasser started the NEC Society to protect babies just like hers. After losing Micah, Jennifer continued to hear stories of infants just like Micah being impacted by NEC, and mothers just like her who never realized the risks of formula and the life-saving benefits of human milk. One year after losing her precious son, Jennifer joined with other mothers and families of infants impacted by NEC, recruited some of the world’s leading NEC researchers and clinicians, and founded the NEC Society. This collaborative non-profit is dedicated to raising awareness about NEC, with a specific focus on ensuring that all fragile infants receive life1saving human milk.

Join the NEC Society and the Best for Babes® Foundation this Saturday, May 2, for their Annual North American Wide Miracle Milk™ Stroll. Connect with or donate to over 160 local teams across the U.S. and Canada, to help raise awareness and appreciation about the importance of human donor milk, encourage milk donations for local and national non-profit milk banks, and raise funds to educate parents, providers, hospital administrators and the public about the critical need for human milk in the NICU. In the years to come, we hope that all NICUs will have a policy to reinforce the importance of human milk, whether from the mother or by donor, and we will see fewer cases of NEC taking the lives of our babies.

Are you ready to be a voice for the fragile babies who need you? Register for the Miracle Milk Stroll or consider making a donation to one of our Stroll teams. Talk to others about the risks of NEC in premature newborns. Let’s make this happen.

Want to donate your milk? Contact your local milk bank or the Human Milk Banking Association of North America (HMBANA) directly to learn more about how to become a donor.

Dianne Cassidy, MA, IBCLC, ALC, CCE is a Lactation Consultant in Rochester, NY. She is very passionate about supporting informed choice and evidence-based information. Dianne has been assisting mothers and babies for 10 years, and is an educator, public speaker and published author, in addition to volunteering for Best for Babes. Dianne has 3 children, including twins.www.diannecassidyconsulting.com

Reader Interactions

Comments

Thank you for posting this. I wish more mothers who choose to donate milk through informal sources would read this so they know that it’s worth the extra work to donate to organizations like HMBANA. I just have one quibble with the article, however. Since human milk is the biological norm, it does not decrease the risks of NEC; rather, formula increases these risks (and because of how the math works, it increases it by a lot more than 80%). As we work to re-establish breastmilk as the social norm, language changes like this can be very powerful. Keep up the good work of beating the Booby Traps!